I have recently been diagnosed with my third neuroendocrine tumor

I was diagnosed with NET’s a little over 2 years ago . Very fortunate to have Mayo Jacksonville 1/2 hour away from our home. After careful review of all my scans, I met with their NET team.. In was informed at that time not to think of this as regular cancer cause if it was , with the amount of tumors on my liver it would be a whole different story.. I really didn’t have any symptoms and was not suffering from any loss of body functions.. His approach was not surgical, and he didn’t recommend Chemotherapy.. It was well explained. As treatable, not curable. I could go into my plan , but everyone has a different medical situation. I would always question what he was doing to what I’ve read here and other sources.. He always knew what I was talking about and was able to explain why or why not in my case.. I believed his advise was solely based on experience, and I felt very comfortable with his plan. he always welcomed my questions, which made me even more comfortable with this team.. Phone calls are returned and on my patient portal I always receive a quick response to all my questions. I hope you get all the answers you deserve, Best wishes on your quest for a treatment plan..

Thank you for your reply and sharing. We hope that you continue to have success in your treatment plan. We are contemplating going to the Mayo Clinic at some point in the future if another net is diagnosed. As of now, we are just trying to get educated on this disease And how to best proceed. Please take care and we will keep you in our prayers.

Hello @hunts1014

My original lesion was found during a routine upper endoscopy. My first two surgeries were invasive with a resection of the duodenal bulb. They were 3-hour surgeries with a 5 to 7-day hospital stay.

As I live in SE Michigan, I have never been a Mayo patient, however, when the third carcinoid was found, I went to a well-known university medical center in Michigan. As this tumor, as well as the other two, was quite small ((small, 5 to 6 mm), they indicated that it could be removed by an endoscopy procedure. During this procedure, they also used APC treatment, as the lesion was flat and not easy to remove.

Much like you were told, I needed upper endoscopies regularly as a follow-up. My surgeries were in 2003, 2005, and then again in 2016. There has been no evidence of metastasis, and so I have not needed any further treatments. At first, my follow-ups were yearly, but now every two years.

If you are not comfortable with the information you have received, I would encourage you to get a second opinion. Mayo Clinic has NET specialists at all three of its locations. If you would like to get a consultation at Mayo, here is a link with appointment information. http://mayocl.in/1mtmR63.

It is important to be as comfortable as possible with any possibility of recurrence. There are certainly no guaranties with NETs, however, the more information you gather will be helpful.

I would love to hear from you again and know how you are doing. Will you post again with any questions or concerns?

Hopeful33250,
How are you doing with your journey?

Hello Hopeful33250. Thank you so much for your replies! I will keep you in my prayers and hope that you have had your last NET.

I’m doing ok. It’s been a little difficult trying to understand all of the medical opinions and lack of standard practices for monitoring going forward. I have seen two different oncologist, one was a surgeon/oncologist at MD Anderson and the other a local oncologist. I have also seen three different gastroenterologist. It appears to be no real standard guidance for how to monitor me going forward. They have their own recommendations, but they all seems to vary. One doctor says I should have scans, bloodwork and endoscopies, while the other says to just have endoscopies. They also differ on the recommended time intervals for monitoring, but agree that I will need to be followed for the rest of my life. I just want to try and stay on top of it so that if it does reoccur, it will be found in time to remove it.

I have had stomach issues and IBS for about the last 37 years. It started with a bleeding ulcer and a high acid stomach. I have been on stomach meds for that same time period. My doctor put me on PPI’s as soon as they were available. Now the doctors are saying that there is some, in the medical community, think that long term use of PPI’s could contribute to causing NETs. I have tried over the years to stop taking them, but I can’t function well with the resulting stomach issues. My stomach is always irritated, even with the PPIs, but without them I could get ulcers and esophagus damage.

I just need to figure all of this out and move forward with living!

Have you ever been on PPI’s? I was just wondering why you had routine endoscopies.

I hope you are having a wonderful day! May God bless you.